I was just reading an article stating that an estimated 1 in 2000 Americans have narcolepsy, over 135,000 individuals. Why is it that so few people actually seem to seek the help and the support of others? You would think that having a relatively unusual condition would drive people to seek understanding.

I have been trying to get a Narcolepsy support group off the ground here in San Antonio, TX-- the second-largest city in Texas and the seventh-largest city in the United States, so you'd think there'd be a lot of people with Narcolepsy here -- and have gotten ZERO response, so your post really struck a chord with me.

I think the reason more people don't seek out support, is because people don't know they have Narcolepsy. It is VERY under-diagnosed, and some individuals endure 10+ years of misdiagnosis before they finally learn they have Narcolepsy. (It was 14 years from my first symptoms to my diagnosis). Some will go their whole life without knowing.

For those that do know that they have Narcolepsy, I think it is such a struggle to have only "so many" good hours in the day that they may not have time to introduce support relationships into their life. It can be very isolating. In the years after college I became a virtual 'loner' because I didn't have the awake time to commit to maintaining friendships.

For me, I would not have been able to participate in a support group, much less lead one, until I was on my medication and behavior regimen. I think the nature of the illness as something that is under-diagnosed is probably the biggest driver for the lack of those connections.

This is why it's so important for those of us who feel good to be advocates to the public. Advertising a Narcolepsy support group only interests those who know they have Narcolepsy. A more realistic approach is advertising a talk or group for people who feel tired all the time. If they come to that type of a meeting, there can be information on various sleep disorders including Narcolepsy, and maybe then they'll talk to their doctor to say "I think I may have this."

Just my $0.02. I definitely need support, which is why I've been willing to try to get this group off the ground with very little success at this point.

K

QUOTE (RipVanWinkle @ Aug 11 2008, 11:54 AM)

I was just reading an article stating that an estimated 1 in 2000 Americans have narcolepsy, over 135,000 individuals. Why is it that so few people actually seem to seek the help and the support of others? You would think that having a relatively unusual condition would drive people to seek understanding.

Good article. Thanks for posting the link. I'm not sure if those numbers are the number diagnosed or the number they think may have it diagnosed or not.

One idea about the family thing... maybe one of the reasons you're so much more likely to have N if a close family member did is because you know it is possible. I'm not sure... just an idea. I do think that there are a lot of undiagnosed narcoleptics out there though.

For me... I laughed after leaving the doctor when he told me I had N. I called my mom laughing and she got mad... she said "that's not funny!!! your grandpa had that!" Thanks for telling me sooner mom lol. Since then 2 of my siblings have been diagnosed too. They never would have gone in if I hadn't been diagnosed with N.

So anyways I bet if you have a family member with it diagnosed you're more likely to actually consider it and do a sleep study and nap study.

I think the reason we (narcoleptics) go on for so long without dx is that we explain away our sleepiness. "I'm just stretched too thin" was my mentality for years! When it was suggested that I take a sleep study for narcolepsy I was flabbergasted. I had in my mind (obviously the misguidance of entertainment and media) that people with narcolepsy all had cataplectic attacks related to emotions.

I think if someone did a better job of explaining to the masses how subtle the disorder can be, that many, many more people would seek treatment. That- or the manufacturers of narc/cata medications could to a "little purple pill" campaign and propel narcolepsy to the ranks of GERD, ED and RLS!

Napping at work in Japan is culturally acceptable- it means you are a hard worker. I think we are just living in the wrong country to have Narcolepsy. Here is a link: http://seriousfacts....look-committed/

I am curious if the history of Israel has something to do with it. Israel certainly has had a long and turbulent history. Since N has a strong genetic link, maybe N was just bread out over the generations. Between slavery in Egypt, Roman occupation, the Diaspora and the Holocaust- the Narcoleptics never made it.

Japan is an island nation, so genetically there is not a lot of genetic mixing. And Jewish culture maintained a separation from other ethnic groups until more recent generations. There was a lot more ethnic mixing in Europe.

Well, the hygiene hypothesis helps to explain why Narcolepsy is more prevalent in fully-developed first world countries, since Narcolepsy has been linked to the same defect as MS. In a nutshell, the idea of the hygeine hypothesis is that we are too clean. Therefore, in the absence of the normal level of pathogens a human body is exposed to, the white blood cells go rogue, kinda like how some standing occupational armies tend to get bored and start randomly shooting civilians. This was first posited when they noticed that MS was much more prevalent in the temperament zones of the northern hemisphere. In other words, where most of the G8 are. Moreover, it didn't not seem to be a trend based on race/ethinicity/country of origin, because if you took a person from one of these high risk zones, and moved him to a low-risk zone, his/her chances of developing MS went down. Likewise, if you took someone from the low-risk zone and moved them to a high-risk zone, their chances went up. So it's likely that there is a genetic defect that causes autoimmune diseases, but the likelihood of such a defect causing an actual problem goes up in societies like ours, because we are obsessed with hygiene.

It is an interesting article. Makes me think that Parents are more paranoid about the health of their firstborn...which results in more visits to the Doctor and more unnecessary antibiotics being prescribed ...which upset the balance of normal flora in the gut...those lovely little good bacteria which are the backbone of our immune system.

On an unrelated note, I'd love to be tested for this. It seems like something that could cause secondary N, as well as a few of my symptoms that N doesn't fully explain: http://en.wikipedia.org/wiki/Fungemia

EDIT: In fact, I'd just like to be tested for parasitic, fungal, bacterial, and viral pathogens in general. Just to make sure there's not something actively causing the N. I know it's a long shot, but it'd suck to live like this for 30 years then get a blood culture done and they're like "Oh, you just had this all along, take these pills for a week and you're good to go." I would probably rage dump the whole universe.

It is Very related to my post. Candida albicans actually is part of the normal flora in your gut. It's all about balance. When you take a antibiotic, it wipes out ALL the bacteria...both the good and the bad. Antibiotics do NOT affect the Candida. It's party time for them and they proliferate and take over if unchecked. That's why it's so important to take a probiotic after you've finished the antibiotic...to replenish the good bacteria.
There is a medicine that is specific to CCandida Same goes for parasites....they are opportunists that take Dvantage off compromised immune system.
Sorry for. Errors...waiting for new laptop...all my precious bookmarks gone. I need a real keyboard,